Saturday, July 27, 2013

This weeks update

I had an unusual week.  The "good day, bad day" scenario played out.  I had a couple of days that I would definitely consider bad.  I was not able to get myself out of bed because of the pain.  Vic did a wonderful job helping to manage the pain and learned as much as me in the process.  It is very important to stay ahead of any discomfort.  If you let it get away from you, you will not catch up and a day in bed will probably be the recipe for the day.  The hospice nurse is stopping in three times a week now and between her and Vic I feel very well taken care of.  We also met with our social worker  this week.  This will be an every two week occurrence and the information he can give us is invaluable. As part of the hospice package, the social worker makes certain you get what you need to be comfortable.  I mentioned we are going to try to make it to the State Fair this week with the grand kids.  I told him if I could handle this physically we would rent a wheel chair and go for the afternoon.  His immediate response was "what kind of chair do you need?". After talking about what would be best for me he ordered a Transport chair that will be delivered to the house in a couple days.  He said if you need something ..."Just Ask!"  My comfort is the goal and they mean it.
Overall it was a good week.  Allison is still here with the kids and I get to see them almost everyday.  Having them here with me has been so great for both them and me.  I thank Allison for staying as long as she can.  My older brother and his family came in from Minn to spend some time with me, which I really appreciate.  Vic's brother and family also stopped by last night. Sam and Ali came by after long nights at work.  What else can you do but have a huge family bon-fire, which we did.  It was a great night and it is something I will do whenever I can because I'm with family and making a smore is not physically demanding.  If God allows me to spend my finals days like this, I'll take it.  Another good week....Check!  Keep praying and I would love to hear from you.

Tuesday, July 16, 2013

One day at a time

Now that I have had an opportunity to put a couple of weeks together, I am understanding the final phase much better.  There is no secret like a special diet or vitamins or anything at all.  It is very simple. Everyday I will be getting a little worse than the day before.  The amount of decline may be very small but, there will a decline everyday.  When I talk about decline I am talking about a variety of different things.  Here is what has been going on lately.  Everyday I get more fatigued.  I don't need to sleep all the time, I just need to give my body a chance to gain some energy back.  It seems to take longer to recharge everyday.  My temperature is fluctuating more each day which means the amount of sweats I get is increasing.  Let me try to explain the "sweats" I get.  I can be sleeping, awake, moving or stationary and my body will do the same.  Its like someone is pouring water on my head.  I get what they call drenching sweats.  These get worse as each day passes.  My appetite will continue to get worse.  I will continue to lose weight.  These are the easy ones to deal with.  The one item that will be the toughest to deal with is the pain.  I have to keep an eye on pain meds everyday to make certain I am taking enough to stay ahead of the pain.  Unfortunately, I've been told that the actual pain will eventually outrun the benefits of the medication.  This is where Vic has her work cut out for her.  It is going to be her job to keep me as comfortable as possible until it is over.  God bless her!!
So in a nut shell, my decline is happening everyday and I have to accept that fact.  My job, with the help of everyone around me, is to stay as comfortable as possible and to be ready for the end. So far so good.  Oh yeah, time frame?  There is nothing set in stone.  Just accept the fact that I am getting worse not better and we all have to be ready.  Keep praying.

Saturday, July 13, 2013

Good day + good day= Good week

I really don't know what constitutes good or bad when it comes to my situation.  From a medical standpoint I seem to be doing well because I have not had any debilitating episodes.  My vital signs have all remained in a good range for me.  The amount of pain I am experiencing is increasing but, I only had to increase my dosage of meds by a small amount.  I do feel what I would describe as "good".
Mentally things are going well.  I have had a great opportunity this week saying good bye to some of my close friends.  We were able to laugh while we relived our stories and tell each other what we meant to each other.  Now comes the best news of the week.  My grandchildren are here to see their Papa Charlie.  Matt and Allison got in last night so I will spending some quality time with all of them.  Overall I would say the week was good.  I suppose if you add up a good day everyday, you will have a good week.  So far that formula is working.  Keep praying.

Sunday, July 7, 2013

One week, Good week

As I have said before the goal to my final stages is to string together good day after good day.  This past week has been a good week.  With the time frame that has been somewhat imposed on us, we put our noses to the grindstone and did some things that needed doing.  Funeral planning was something we talked about but we always seemed to find a way to put it off.  Last week we said no more excuses and went ahead and did it.  I am so glad we did because there is so much more to a funeral than you would think.  The idea of Vic and the boys having to do this during the grieving process leads me to believe that something would have been missed.  Now I know everything is covered and all Vic has to do is pick up the phone and start the process when it is time.  Just a side note, if you want you can actually pre-plan your funeral at any time.  This may be helpful for the future.  You don't have to sign up for anything but,  it can give you a good idea on what the funeral home is capable of along with the pricing.  Our funeral director was a younger woman who really enjoyed the idea of being able to talk to the client.  That usually doesn't happen and she mentioned it was nice.
I also met my hospice nurse this week and I really like her.  More importantly, Vic likes her a lot and they seem to both get along well.  The nurse made it very clear that her and Vic will be teammates throughout the process and Vic really understands her role and how important it is.  I was also told what Vic has been trying to tell me for years, she is the boss.  I have to listen to her and heed her advice in order for this hospice thing to work.  It does seem to be working so I'll go with the flow.
The big question this week is what is going to happen to me physically.  The nurse explained that pain is the sign to look for.  Without any treatment my tumors have free reign to grow and their growth will cause pain.  I have experienced an increase in pain starting on Thursday.  Pain management is the only way to feel better and as time goes on the pain will be something that is not manageable and I will have to fight through whatever I can.  Along with the pain, my other organs like heart, lungs, kidneys and liver will be compromised and more than likely fail causing my death.
Nobody knows the timeframe and the only clue will be how I feel each day.  That is my mantra...Everyday is going to be a good day!  So far the Lord has once again blessed me by allowing me to spend time with my family and friends.  This has been a great closure time for so many people and I know it will continue until God is ready to take me.  Keep praying, everyday is a good day!

Tuesday, July 2, 2013

"While I still can......"

"You better do it while you still can....".  This is a comment that I've been hearing a lot lately and it's very true.  Ever since my release from the hospital I have had the opportunity to spend time looking at this cancer battle from the mental side.  We made the decision to let the physical do what the physical will do.  No more treatment, just try to stay comfortable.  I was not aware of how difficult the mental side of this would be to deal with.  I was not aware that the mainstay of my "treatment" was going to be pain management.  I've always prided myself on having a sharp mind and the narcotics have definitely dulled a good portion.  It is actually funny to listen to Vic and Sam tell me some of the things I did that I had no idea I did.  We all laugh, but I can see how it hurts them knowing this will be the new norm.  There are times in the middle of the night when I get frustrated because my mind is not working right.  I tried to explain to both Sam and Vic one morning that I fell asleep to a show on TV that was filmed in Alaska and when I woke up I thought it was winter outside.  No big deal but, it happened more than once.  That is when it gets a little spooky for me. I am writing about things like this because these are the things that make me feel blessed.  I have the support and understanding of Vic and Sam everyday.  They can be my filter but at the same time they allow me to just talk and discuss what's going on.  I read about people who are going through this phase and see that the drugs are the only support they have.  They use them for  both mind and body numbing.  Not me.  I still feel God has some things for me to say.  Stay tuned for those gems (get ready filters). Just kidding.?
Something else that has happened over the past few days has been a huge increase in communication between Vic and I.  She has been lucky enough to take some vacation days from work so she has been here full time.  We have used this time to just sit and talk.  What do we talk about?  Everything.  We have set up where the funeral is going to be and what will be done at the service.  We've gone over my hospice care and how that all works.  We have got tons accomplished which will be very helpful in the long run.  Most importantly, we have had the time to talk about our lives together.  We have laughed and mostly cried as we talk about the immediate future.  We have kind of reviewed our lives together and I am very happy with what we did.  Our boys have given us all a parent could ask for.  We have lived our lives in a way we can be proud of.  We had many chances to go to what I call the "Dark Side" and cave into a materialistic life style but we didn't.  I'm very proud of this. Our focus has been and remains on the happiness of the entire family and the payoff shows we made the right decision.  After we did a kind of an inventory on how we think we did, we were both comfortable enough to make a decision.  We decided every night that in addition to saying I love you when we go to bed, we are comfortable enough to say "good bye" and feel peace and solice.  You don't need a pending death to do this.  Go ahead, take your own inventory and see how you feel.  Keep praying.